Esther was 24 years old when she was diagnosed with aplastic anemia (AA). For the next 10 years, she was able to manage her AA. But then her condition suddenly got worse and she needed a blood stem cell transplant.
Her family moved permanently from Washington, D.C., to Boston for her transplant, leaving their friends and old life behind. They moved in with her in-laws for nine months until they could find a home of their own.
The transplant caused major upheavals in their lives, but through it all, Esther did her best to keep a positive attitude. Here’s her story, in her own words.
My number one goal after transplant was to get well. I didn’t always like the path I was on, with all the ups and downs, but I stayed the course and always did the best I could.
During the first year after my transplant, I experienced typical side effects: hair loss, skin and mouth irritation, food aversions, nausea and acute graft-versus-host disease (GVHD) of the gut. There have been times that were frustrating and disappointing. But whenever I started to complain, my husband would remind me of the promise I made on the day of my transplant—that we don’t have bad days. We may have sad days, scary days, disappointing days or feeling unwell days, but never a ‘BAD’ day.
I couldn’t always control my physical condition, but I could control my attitude. Focusing on my priorities put things in perspective and kept me motivated. For instance, there were days when I thought that getting through it would be easier if I wasn’t a mom, but the truth was it was exactly the motivation I needed to get up, get dressed, exercise and take medicines that made me nauseated.
As I worked to rebuild my life, I realized that my experience changed me. I am more grateful and I tell people what they mean to me more often. In some ways, I’m a nicer person, more compassionate and less judgmental. But in other ways, I have less patience for nonsense, complaining and ingratitude. I’m also more confident now. I live more fully and authentically, recognizing that life can end at any time. What we make of it is up to us.
Things are not what they were before. Some things are worse, but most are different and better. The key was letting go of what I had before, so I was open to loving my new life. Clinging to what I looked like, did or felt before was keeping me trapped in the past. I had to mourn what had changed so I could embrace what I have today. It’s not about pretending, but about letting myself be sad for a period of time and then getting over it and moving on.
So I can’t take my kids to the pool, but I can take them to the museum. I can’t ride bikes with them and my husband, but I can scrapbook with them and help out in their classes at school. For every limit, I create an alternative that meets the same needs for togetherness and fun.
Today, life is good. Not always easy, but good. I open my eyes, think of my donor and know that I am here. I walk into my daughters’ room and know how lucky I am. After all we have been through as a family, we are not only surviving, but thriving!
Your sense of control
Making a new life and achieving new goals takes focus and determination. You may have to give up old habits and old ways of thinking. Defining what you want can help you move in a new direction. Ask yourself:
- Am I living the life I want to live?
- What is my vision of living well?
- How can I grieve for and acknowledge what I’ve lost?